Wednesday, October 31, 2012

Halloween Randoms

I actually didn't even realize today was Halloween until I looked my calendar just now. It's weird because Halloween used to be my favorite holiday by far, partly because it also meant my birthday was close. Speaking of,  I'm getting SO old. Does 22 make me a grown-up? Sometimes I'm super independent and super self-sufficient, and sometimes I'm like, holy fuck when did I stop being a kid and WHY DIDN'T ANYONE WARN ME THIS WOULD HAPPEN?

My biggest wish for my birthday (besides a new body, new eyeballs, a new metabolism, a new therapist, and world peace) is for my darn phone to get here. My dad ordered one for me last week (thanks Dad!) after mine took an unfortunate swim in the can, and it was supposed to arrive yesterday but got delayed - mostly likely because of Sandy. Now, I'm not going to get all bent out of shape and throw a fit about it, since I'm pretty lucky that a delayed package is the ONLY personal damage I've suffered from the storm, but it's getting seriously inconvenient to be phoneless. All I can say is thank God for the internet.

Anyway, I'm trying to stay busy and not get totally bogged down with depression. I'm still crying a fair amount, although I can usually pull it together in time to take care of real life. My weight is really really really really bothering me, but I'm doing okay with telling myself "You must eat. You need food. This isn't forever."

I had a meeting with a woman on campus the other day and I swear, she must have slipped the phrase "I have a weight problem" into the conversation at least six times. Can I buy you a coffee, Kaylee? How about some breakfast? Oh no, none for me. I have a weight problem.

She was perfectly lovely and we had a great conversation about unrelated things for work, but this woman was positively DETERMINED to convince me of her "weight problem." She wasn't even overweight, so far as I could tell. She looked perfectly average and healthy and happy. I kind of wanted to throw out an I hear ya, sister! I've got quite a bit of a weight problem myself! LOL. If only she knew.

So, that's my lame and unexciting Halloween update. I didn't have a costume this year, although I was downtown for the BIG College City Halloween extravaganza over the weekend and it was madness, I tell you. MADNESS. It troubles me to see adults acting like frat boys. Really, I fear for us all.

Sunday, October 28, 2012

Other Stuff Happening in My Life

Who's ready for something besides me moping?? I really hate having so many negative posts in a row all over my blog. Sometimes I forget about the parts of my life that don't involve me crying, whining, writhing on the floor in misery, contemplating jumping out my second story window. But there are a few! Behold, fellow bloggers:

- I am an IDIOT and dropped my phone in the toilet the other day. Don't you fret, the toilet had not yet been used, but fishing it out was still pretty gross. My friend assured me that her phone had survived a similar plunge but alas, mine was totally fried. I ordered a new one but it won't get here until Tuesday. Sheesh, I never realize how dependent I am on my technology until it betrays me. My computer broke this summer and I was a wreck for the 24 hours it was in the shop. At least that one wasn't my fault, whereas the Phone Incident was just humiliating. I FORGOT IT WAS IN MY BACK POCKET. SUE ME. Did I mention I'm an IDIOT?

- I skyped with my parents earlier today. They are ridiculous. My brother and I always used to wonder what they would possibly do without us home to keep them busy, but we shouldn't have worried because Mama and Papa Bear have taken to the empty-nest situation just fine. My dad now fancies himself a semi-professional birdwatcher/nature photographer/Davy Crockett-type while my mom skips along beside him oohing and ahhing over the leaves and stuff. Literally every other day, my dad sends me photos of their outdoorsy exploits and I have to reply like "Oh wow, Dad, that's great, another brown bird." "Oh look, another one." "Hi Mom. Yes, the colors are very nice." Then they fight about politics, which is silly because I'm pretty sure they're on the same side. Then they make up and go to the movies.

- Oh my God, you guys, this one isn't funny at all but I almost killed a kid the other night. I was giving my friend a ride home from campus and I was so focused on trying to make a left turn into traffic that I didn't see the kid walking from the other direction on the crosswalk. (In my defense he did NOT have the walk signal.) So I started to pull out into the road and my friend flipped a shit. He is normally a really chill, calm guy, but apparently I freaked him out because he grabbed my arm and started yelling "KAYLEE THERE'S A KID CROSSING! WHAT'S YOUR PLAN? WHAT'S YOUR PLAN??" so I slammed on the brakes and thankfully the pedestrian was totally unharmed (and unaware, I'm pretty sure) although I think both my friend and I both suffered minor whiplash. Whoops!

- Not five minutes later, some imbecile driving a big SUV swerved into my lane and almost hit me. I had to pound on the horn and slam on the brakes again. By the time we got home, my poor friend was curled up in the passenger seat looking ready to puke, clutching his stomach and whimpering and trembling and stuff. Guys! Stop! I'm a really good driver! Shut up.

Friday, October 26, 2012

Hard Times

Therapy was really hard this morning. I had promised myself to be honest with R about how depressed I've been, but of course I still found it near impossible to choke the words out. So I started to cry instead, and he worked it out anyway. Go figure.

I think R just doesn't know what to do with me anymore. (Same with my last three eye doctors and five gynecologists, but I won't take it personally.) He asked if I feel better after talking with him, or if I ever think about stuff during the week that I want to bring up in therapy, but really, I don't. Mostly I just feel sad and hope that R will have some suggestions to make me feel better. But then I get to my appointment and don't know what to say other than basically: "I don't feel good." Partly also, most of my problems are related to physical stuff right now, so talking about my feelings seems kind of silly and pointless.

On a slightly better note, I also saw my psychiatrist this week - Dr. L. She's wonderful. She always reviews my file and talks to R and J and does some outside research on stuff that might help me before appointments. We talked about switching my pain meds because I am not handling the weight gain side effect well at all. No, I'm not overweight and no, I'm not gaining at a medically dangerous rate or anything even close to that, but it's happening too quickly on not enough food. The bottom line is that I simply can't cope with the meal plan and the medication-induced gain at the same time. Just can't do it.

Anyway, the drug has also made my eyes infinitely worse, and I'm pretty much sleepy and sluggish all day long. Dr. L is going to get in touch with my other doctor who prescribed it to talk about switching me to a different brand which hopefully will have fewer side effects. Have I mentioned I hate drugs?

Things are just really hard. I'm trying not to get so down all the time, but it's a struggle. It scares me to be crying all the time and feeling so out of control. I even skipped class the other day because I was feeling so crappy. You guys. I don't skip class. But I just couldn't stop crying long enough to go.

I want so badly to have a normal body and a normal life. I just feel like if I could have that back, then everything else would fall into place. I feel like I could handle anything after this. I just don't want this anymore.

Tuesday, October 23, 2012

Results and Reflections

Good news first: negative for Sjogren's and lupus. Whew. As for the rest of my bloodwork, I was low-ish in iron and vitamins A, B, and D, but not officially deficient in anything. The bad news then, I guess, is that I have pretty much no more information about what's wrong with me. Part of me was kind of hoping to have some (treatable) red flag pop up in my bloodwork that would shed light on everything that's been happening. No such luck, unfortunately, and I'm pretty much back where I started.

I don't really have anything else to post about. I'm just sad. I want answers. I want to feel better. I'm trying so hard to eat well, but this damn medication is making me fat. I know I promised you guys I wouldn't whine anymore...oops. Last week I was feeling way more positive and less down-in-the-dumps, but now things just seem crappy again. It's not even my mind that's pooping out on me this time, it's my body. I hurt and I'm tired and I can't see. Things aren't getting any better, and I really can't imagine living the rest of my life like this.

I've never been suicidal (like, not ever, so nobody get freaked out or anything) but sometimes I think about dying. Like, what would happen? Would that make things suck less? No worries, I'm not going near any afterlife/heaven/hell/reincarnation/etc. theological debates with a fifty-foot pole, but sometimes I wonder what happens next and whether things would be any better for me. Anytime the thought of dying crosses my mind, though, I start thinking about my parents, and my brother, and my roommate, and my best friend P back home, and my uncle M who used to drive me to Dr. R's office last year before I got my car. And then I think about my car, and wonder, who would drive him if I weren't there? (Yes, my car's a dude. You can call him Sam.) Who would pack up all the books in my trunk? (There's a small library back there. Sam's a trooper.) What would my thesis advisor do on Mondays at four o'clock? What would R do on Friday mornings? And what would he do with my file, since he and J wouldn't need it anymore?

I'm not gonna kill myself, pleasepleaseplease no one get worried or scared or anything silly like that. Sometimes I just find myself wondering about this stuff a lot. I'm really scared of feeling terrible forever.

Sunday, October 21, 2012

A Big Thanks

I just wanted to thank the people who made suggestions on this post. I was going to respond to the comments but never know if anyone actually goes back and reads them. Just to keep you all in the loop, I got tested for vitamins A and D, iron, and a couple autoimmune diseases (pleasepleaseplease everyone keep your fingers crossed I don't have something scary and incurable). I won't get the results until next week, so for now I'm just trying to chill out and not fear the worst.

Anyway, it helps SO MUCH to hear stories about how drastically everything improved once you got totally weight-restored and on a regular eating plan. I am so incredibly glad that so many of you are doing well! You guys are the best!

Saturday, October 20, 2012

Things I Am Liking

Country music. My roommate got me hooked on a couple radio stations. I am really a city girl at heart and have zero emotional connection to, like, farms and cows and stuff, but I do enjoy a fun feel-good country song now and then. But I have some conditions: 1) Must be upbeat and have a sense of humor, nothing slow or depressing. 2) Not too twangy. Banjos only acceptable on limited occasions. 3) Quit talking about your damn TRUCK. I don't CARE.

Eucerin moisturizing cream. This stuff is a godsend in the winter (or anytime, really, since my hands seem to repel moisture). It's super thick and makes your hands a little slippery for a few minutes, but then your skin will be soft and lovely.

Sensodyne toothpaste. Over the past couple years, I started noticing that my teeth were super sensitive to temperature and they hurt when I bit into something crunchy. My dentist suggested I switch from regular old Crest toothpaste to Sensodyne, and I've noticed a HUGE difference.

Peanut butter. This needs no elaboration. My uncle is deathly allergic and I cry for him, on occasion.

And, in a related vein, Things I Am Eating:

Cake. Well, I had one piece at my friend's apartment one night last week, but it was totally unplanned and calories totally unknown.

Real bread. Like, the thick hearty kind with grains and seeds and stuff. None of the low-cal fat-free cardboard crap that disintegrates in the toaster. Been there, done that. Yuck.

Muffins. Again, it was just one muffin, but still a big deal for me. I was in a coffeeshop and was running a little low on calories for the day, so I just decided, why not? It replaced my regular boring snack, so a big change in routine as well. fatsaregoodfatsaregoodfatsaregood

Peanut butter. I know I already said this. Shut up. Your argument is invalid.

Wednesday, October 17, 2012

Vitamin Deficiencies

I may be grasping for straws here, but recently I've been wondering if something simple like a long-term vitamin deficiency is contributing to a lot of my health problems. Specifically my eyes—I went back to my doctor on Monday for a follow-up after being on a steroidal antibiotic for two months, plus the other couple drops I'm using, and there was zero improvement whatsoever. Literally none. My eyes are about as bad as they've ever been, and it's really wearing me down. Direct quote from the ophthalmologist: "Your eyes just don' And I'm out of bullets."

So, basically, he's stumped. He offered to refer me elsewhere, which I suppose is a nice way of passing me off because he has no clue what to do with me. This would be frustrating on its own, never mind the fact that I'm also suffering from pretty debilitating hip and pelvic pain on a daily basis as well. Oh yeah, I forgot to mention I was also diagnosed with IBS over the summer, although that may have more to do with refeeding belly/bloating than anything else.

Okay, cutting the bitterness now. Really sorry to whine about this all the time, I'm gonna try and tone it down in the future, but I'm stumped and frustrated and really depressed about the whole situation. Anyway, my point was that I've been doing a little research online (I try not to, because it generally just makes me freak out) and I'm wondering if my body is still just woefully out of whack. Regarding my weight/nutrition, I am basically at the lowest healthy weight according to the charts, although my treatment team's goal weight for me is XX lbs higher. I've been pretty significantly underweight for the better part of three years now, and probably undereating for longer. Even now, I'm eating an okay number of calories, but not a huge amount by any means, and my diet is extremely limited. I take calcium supplements, fish oil pills, and a multivitamin, although I don't always remember. Going to make that a priority from now on.


I just refuse to believe that at (almost) 22 years old, my body defies all modern medical knowledge. It has been my experience that specialists often focus ONLY on their area of expertise - aka the eye doctor ONLY looks at the eyes - and fails to take into account the fact that I also have multiple other rare, chronic conditions going at the same time. So now, I guess, it falls on me to keep the big picture in mind. Does anyone know how to get tested for vitamin deficiencies? I'm seeing my GP tomorrow and want to have some specific questions ready for her.

Wondering if anyone has had experience with this, or has any other suggestions. Thanks, love you all so very much. I promise to be more interesting/entertaining/positive next time.

Saturday, October 13, 2012

"Life, Interrupted"

Oh hey, look, another New York Times link: the Life, Interrupted series by Suleika Jaouad is an absolute must-read. The author is a woman in her twenties with cancer. All of her columns are good, but the first one especially captures the unique injustice of being a young person with an incapacitating, life-threatening illness. I am so rooting for this girl to get healthy. Also, she seems really cool and I want to be friends with her.

Friday, October 12, 2012

Thoughts vs. Actions

Hey all—it's been a really busy week and I'm just now coming up for air. Pretty sure I semi-bombed one of my exams yesterday but whatever, it's done. I really need this weekend to just like decompress and get myself organized and catch up on all the stuff I put off while in frantic cram-mode this past week.

On the medical front: My newest doctor referred me to a PT clinic, but they couldn't fit me in for almost a MONTH. Sheesh. At least I have other appointments to keep me occupied until then. Eye doctor on Monday - everyone keep your fingers crossed for good news. I saw R this morning, which was lame, until I stopped being difficult and decided to actually TALK. Hmm...

Something that came up was my appointment with J last week. She's normally chipper and perky and positive, but this time I left her office feeling negative and defeated. She seems to think I'm still stuck in ED-Land, totally opposed to any and all forms of recovery. I don't know how else to say this that will convince people: I am trying so hard with food. I really am. I want to get better. Seeing Dr. P last week really gave me a big boost in motivation. I want to feed my body the things it needs to repair itself. Body image is still ehh, but I'm getting there.

The hardest part, really, sounds stupid but be gentle: I just don't know what to eat. I am so dang used to eating the same thing every day, to negotiating down wherever I can, to scraping by on the minimum, that when I get to the end of the day and realize I'm down XXX calories or whatever from my goal, I just don't know what to do. Eating too much at once feels like bingeing (which is silly because it's not, and I've never binged in my life) but I'm not going to get anywhere by eating skimpy little rabbit food snacks, you know? But then when I think about beefing up my meal plan, everything seems unappetizing or too much or not right etc. etc. etc. They're all just lame default ED-mode excuses, I know, don't be triggered or mad or disappointed in me, but the mindset is still weirdly hard to get past.

So, I guess there's a bit of a disconnect between my internal motivation and my external behaviors. (What am I now, a psychologist?) It's understandable that J would get frustrated when I say that I'm open to increasing my meal plan, but then shrug off every calorie-boosting suggestion she makes. But for the most part, I feel like I have increased and I have gained weight. I've followed through more in the past three months than at any other time in the full year I've been seeing her. Go me!

I expressed this to R today, and he did some cheerleading that actually did help a lot. Note to doctors everywhere: Kaylee responds to positive reinforcement only. Scolding just makes me want to curl up in a ball and never come out. I think that's why Dr. P was such a breath of fresh air for me—he kept saying "You're doing great, you're doing great," and it made me want to do everything in my power to keep moving forward.

Monday, October 8, 2012

Post-Parent Weekend

My mom and dad were in town this past weekend and I was so happy to have them here. The last time my mom was in town, I spent the day freaking out and crying and generally being a big fat baby, so this visit was a nice change. My dad actually hasn't been to College City since dropping me off at the beginning of my freshman year when I was still totally lost and intimidated. It was kind of fun to show him around campus and the city, bring him to a famous restaurant, etc. I'm probably more of a mama's girl at heart, but I do love my daddy a whole lot and he definitely spoils me rotten.

Meals were okay. Snacks, not so much, but I think I made up for the calories by having bigger meals. I asked my mom one day if she thought I'd gained too much weight, and she sighed and said no, of course not, you don't look like you've gained anything at all. So, I guess that was nice to hear. I GUESS.

We ate out for lunch and dinner on both Saturday and Sunday, and I didn't restrict or freak out or anything. I'm feeling motivated again—remember the wonderful doctor I mentioned? Well, the part I forgot to tell you guys is that he was much more optimistic than anyone else I've seen. Basically, he thinks that all my body failures are totally related to being underweight, and that things should definitely improve with better nutrition = weight gain = stronger immune system, tissues, muscles = less body failure = MUCH HAPPIER KAYLEE. I was so freaking happy to hear that, I wanted to give Dr. P a big hug. This was a huge boost, especially after my last doctor told me that my pain is probably permanent and can only be managed with meds. But Dr. P went over my whole history and was way more optimistic. He kept telling me that I'm "doing great" and stuff, and I really really really needed to hear that. Next step: he referred me to a specialized physical therapist, so stay tuned.

Anyway, that gave me a big motivation boost going into the weekend, and beyond. It's really exhausting to have this invisible pain, the constant nagging reminder that I abused my body for so long and it just couldn't take any more, but all I need to know is that it will get better. I can't be skinny and healthy, I can't restrict and be healthy. I just can't. And that's okay with me.

Another fun tidbit of the weekend: my mom discovered that she somehow accidentally created a Facebook account in 2009 and has no idea how it happened. Oh, Mom. If you happen to see her approaching, lock up your technology. Bad things happen when she gets too close.

Friday, October 5, 2012

Parents, Doctors, and Current Events

My parents are coming to visit this weekend, which is exciting and a little stressful. First of all, I have truckloads of schoolwork, so I won't have a ton of time to spend with them Another issue is meals - they aren't staying in my apartment, so we're going to end up eating a lot of meals out. I am generally okay ("okay" being a relative term ) with the occasional meal out here and there, but multiple days of lunch/dinner out tend to really mess with me and cause a ton of anxiety.

Food has been kind of weird for me lately. I am still obsessive and irrational and super rigid, but it feels different now, like it changes daily and I am constantly having to reevaluate how I feel about recovery and, therefore, what I should eat. I seem to alternate between two opposite poles. Sometimes I spend an hour in front of the mirror despising my body and convincing myself that any recovery-minded notions are insane because I'm FAT and need to lose weight fast...and sometimes I get super motivated to feed my body what it needs to reach its healthiest state and start repairing all the damage of the past few years. I try to hang onto the latter one all I can, because it feels good and makes eating a whole heck of a lot easier. But gosh darn it, my body image is so bad. It's not possible for me to actually look as fat as I think I do, is it? I want to pull my eyeballs out and try on a different pair, just to see what the world around me actually looks like.

Enough of that silliness. I saw a new doctor* this morning. And he was WONDERFUL. I know that I bitch and moan about how doctors suck and such all the time, but I've also had a few gems. This guy, for one, plus my gastroenterologist, my psychiatrist, and my ophthalmologist. Wish I wasn't anonymous right now so I could give you all recommendations (as well as tell you which ones to avoid!!).

How 'bout that debate? I won't go all political on you, but I do love a good debate. Too bad this one was b-o-r-i-n-g. YAWN. Except Obama's zinger at the end about Romney's busy first day in office with all the angry pro-Obamacare Democrats, that made me laugh.

In other current events, I'm a little freaked out about the peanut butter recall. Peanut butter makes up a not-insignificant portion of my daily intake and I'm not sure what I would do without it. I mean, I suppose there are other kinds of sandwiches out there...but I don't do variety, remember?

Okay, I guess I should get back to my truckloads of schoolwork. Take care everyone, happy Friday!

*If anyone's counting, my medical team currently includes nine doctors. I've seen way more over the past year or so (probably around 20?) but these are the ones I see at least semi-regularly. 

Tuesday, October 2, 2012

Looking Back

Earlier tonight I was reading an article for one of my classes about the US health care system. A big part of it was how people with mental illness really get shafted, both in terms of the care they receive and the amounts they get charged for it. NEWSFLASH. Who's surprised? Anyone? Are you all taking notes?

Anyway, this won't be a rant about that. Too tired, not in the mood. What stuck out to me in this article was the statistic that almost a full 80% of adolescents with a diagnosable mental illness go without treatment. There were a lot of reasons given: poverty, no access to transportation, no qualified local clinicians, lack of parental support, lack of insurance coverage, etc. etc. but really, there are probably a million reasons. And even if a kid leads a totally privileged life and has every opportunity imaginable, that doesn't ensure he'll get treatment. 

Like me: I hated my body from the minute I started puberty and by the time I was thirteen, I was full-on restricting and running excessively. My weight dropped XX pounds in 2 months. My mom went on a work trip for two weeks, and came home to find me positively skeletal. And what happened then? I got a few lectures at the dinner table, a quick trip to the pediatrician for labs and an EKG, and that was about it. Over the next year, I fumbled through "refeeding" myself, gained back up to a healthy weight, and promptly dropped into one of the lowest depressions I've ever experienced. 

I've gone back over that year a million times in my head. What if I'd piped up during one of those lectures at dinner and said "I HEAR WHAT YOU'RE SAYING, MOM, BUT IT'S NOT WORKING AND I'M NOT OKAY." What if someone had admitted that it was gotten out of my hands, out of my parents' hands, and that we needed help? What if I'd gone to inpatient and gained weight on a proper, structured meal plan rather than the weird, chaotic, completely disordered way I did it myself? What if I'd addressed the issues for real back then, rather than muddling through the next six years in a fog of subclinical disordered eating patterns, ritualized overexercise, and intense weight-centric self-loathing? What if I'd actually been treated for the anorexia and depression, rather than being left to believe that there was something fundamentally, horribly wrong with me? What if?

I'm not blaming anyone, and I'm not bitter. I'm just sad. Sometimes I want to go back and do it all over—do it right this time. To let my body develop the way it was supposed to, rather than manipulating and abusing it until the poor thing didn't know which was up. I wonder what I'd be like, whether I'd be healthy and happy and normal. I wonder how much I'd weigh. Just kidding! Mostly I just want to go back and give my old self a hug.